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IIH Remission

Updated on February 20, 2013

My IIH is gone!

I was diagnosed with idiopathic intracranial hypertension when I was 24, back in 2008. I was four months pregnant and I thought it was the end. After living with it for over three years, I had just gave up on it ever going away. I stopped going to my nuerologist for about a year and then when I finally went, he was not very happy with me.

After a brief conversation explaining to him my head hurt everyday in the 8 pain scale range and it never seemed to end. I described my headache as an all over throb that I went to bed with and woke up to in the morning. After a few more questions, he looked at me and simply said I no longer had IIH. If I did have it, I was in remission.

You would think I would have been elated, however I was in pain everyday and I was upset that he was saying there was nothing wrong with me. I told him as much quite bluntly and told him that I shouldn’t have to have another lumbar puncture to prove to him that my pressure was high in my head. He basically told me he would not prescribe my diuretics anymore after that month because he thought that was what was causing my headaches now.

Going home distressed and with a headache to boot, I cried. I already felt like no one understood my disease since I looked okay on the outside, but inside I felt like I was just slowly dying to the pain. With the idea to prove him wrong, I went off my pills immediately. I waited for the headache to rear it’s ugly head again, I was willing to wait till I knew it was sky high to go.

The next couple of days, the headaches were still constant, not really getting better, but still there. On the third day, I woke up without a headache. The first time I had done so in over three years. Wondering what this was about, I waited for it to come. I had lost all hope of it ever going away, I had resigned myself to never playing in the sun, drinking a soda or ever having a vigorous work out at the gym.

It never came. The headaches, the pressure, the daily nausea, it was all gone. I had felt like crap for so long, I almost forgot how good it felt to feel normal and without pain. Going back to the doctor, I was happy to tell him I was wrong and he was right.

So long I was afraid of the headaches, that I really never thought that the pills could have been giving me headaches from low pressure. If I wouldn’t have gotten another lumbar puncture and gotten off the pills, I would still be in misery from all the side effects.

So keep hope, lose weight, do what needs to be done. This is a rare disease and you need to find a doctor who is willing to go against your feelings sometimes. They are doctors for a reason and if you can get off these pills, you should try. It may include having periodic lumbars to see if you still actually have it. God bless all of those with this disease and I pray that all of you can one day have a headache free day or even remission. I does happen, there is light at the end of the tunnel!

UPDATE: One Year Later

So I am ecstatic to say that it is a week from being a whole year without any symptoms of my idiopathic intracranial hypertension. Everytime I get a headache, especially if I wake up with one, I fear that it is back but not yet. Hopefully never. I am in school now, now that I can actually concentrate, finish my first year next week as well. I write in hopes to provide words of encouragement, that it can go away. I will always remember feeling that it would ever get better and I want to let you know it can get better.


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    • kaiyan717 profile image

      kaiyan717 6 years ago from West Virginia

      I hope you too are in remission. It has been 3 months and I feel like I have a whole new lease on life. Although this may be a horrible disease, I am stronger for it and I hope you can see the positive as well. My hope and prayers are with you, fingers crossed!

    • profile image

      Tammy 6 years ago

      I'm glad I have found this post as it's something that I always look for when having a bad day and need a pick me up!! I too feel sooo much better since losing weight and stopping Diamox :) I can do normal things again and have a feeling that I too will be told that I'm in remission when I see my neuro in 2 weeks... Fingers crossed my eyes and condition stay stable x